Abstract

Uncompassionate attitudes of doctors can have adverse impact on the already shattered emotional health of a person with disability. The medical conditions or disabilities are seen in isolation from their daily lives. The quality health care is thus compromised. Disability Studies can increase the understanding of the disabled population. The curriculum offered to medical students has an impact on their learning potential. Medical practice influences social conditions and is also influenced by society. The social background of diseases and their causation must be understood within a holistic framework. Disability studies can bring together various disciplines dealing with human pain, pathology treatment, rehabilitation, and coping skills. Medical students must have comprehensive training about complex human behaviour, ethics, and social justice. They must learn the relationships among disease, distress, and disability. Co-existence of disability studies with medicine can transform medical practice, leading to high quality healthcare. Including Disability Studies in medical curriculum would bring Medical Humanities into classrooms.

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Introduction

Both the co-authors are polio survivors and have suffered at some point of time or the other due to lack of appropriate training on the part of the medical professionals. One of the authors is a counsellor/psychotherapist and the other is a doctor. The first part explores narrative of a young girl as a case study and than her experiences as a disability counsellor whereas the later half echoes the sentiments of a medical faculty with disability.

Reality Bytes

Patient Narrative by Abha Khetarpal

This paper explores my journey as a young person who contracted polio and was left with major emotional and physical problems. It recounts the impact of being used as a living case study for medical students during their education and examination processes. It intends to alert the reader to the human impact and reality of living with what is now a rare condition.

I, being a disabled and a regular visitor to hospitals and clinics, can very well relate to the fact that medical practitioners have to be taught and reminded that people with disabilities have suffered as well as benefitted from the process of treatment and research works carried on in different fields. No doubt, the medical treatments administered on me, after I contracted polio, have proven to be an unmatched blessing for me. However the way my case was handled, inflicted a lot of emotional, physical and psychological pain on me. My deformed body parts were photographed not for my treatment, but for teaching the medical students. As a growing up girl, in her teenage years I was used as a case study as I stood unclothed in front of the male doctors as an example for their “studies.” For them I was only an “interesting case” Thus, completely negating my existential experience. The psychological impact of all that was altogether shattering, making me aware of my deformed and shapeless body all the time. This at a time when the concept of self in a personality is formed in an individual. Another experience was equally horrifying when a nail was put in the smallest finger of my left to straighten it. This was done without me or my family’s knowledge or consent. But the doctors forgot that they had inserted it in my finger and so it wasn’t removed when it had to be, i.e., after some stipulated period of time. The operated finger used to bleed profusely. I was told that a corn might be growing on the tip of the finger and so was recommended to wear corn caps for weeks. On the top of it, I was forced to wear calipers to attempt to walk. All this disabled me all the more as I could not attend my school, could not walk even a single step, rendering me almost bedridden for so long. The excruciating pain which I suffered because of all this was due to the fact that there was complete miscommunication between the various departments and personnel involved in coordinating my care. I was operated upon by one doctor, my case was followed up by another, and then I was sent to an occupational therapist in other department. My calipers were then made by the rehabilitation department. From my perspective everything absolutely disarrayed, completely mismanaged, and no responsibility was taken by anyone. For me it was height of callousness and demonstrated a profound lack of compassion.

Despite or perhaps because of my personal experiences at rehabilitation centers, waiting in long queues of Out Patient Departments (OPD’s) of hospitals, acting as a case study by the doctors, posing for photographs of the deformed parts of my body so that researchers may find out possible surgical interventions which may help in treating the generations to come…all these gave me a focused perspective. I had been bolted inside a body that would not show even a single movement. But with my mental strength intact, I developed a trait or you may say an attitude, known as resilience. I needed to wriggle out of the quagmire of helplessness and this attitude of resilience showed me the way. I rebounded to life from adversity. Disability can shatter the emotional health of a person. All the difficulties or challenges as a disabled person, that I have undergone, have influenced me. But if seen from a positive perspective those challenges have helped me. Challenges and difficulties have brought transformation in me. I have taken them as opportunities and have tried to bring out the best in me. It is not that “I can succeed” or “I will succeed. Just like a rubber ball or an elastic band, I feel, I have popped up back” (Khetarpal, 2011).